I had respite care for a few hours today, which was lovely. I spent them making a 1950's style television out of paper mache. Because, you know. Derby. Yeah.
Anyway, thanks to a combination of President's Day and snow days, Connor only had school one day this week. At least he was out for some reason other than being sick or seizing, but I'm hoping he'll spend some more time in next week! The kid's going to forget what his classroom looks like if he keeps this up. However currently it's 17 degrees outside, and even though it's supposed to warm up a little tomorrow we've been told to expect more snow on Sunday. Spring, hurry up already. I'm ready for some sun!
So Connor spent a good portion of his respite care time banging on his mixing bowl again, which I captured here so that you too can share in the wonderful, glorious musical that my life has become. Just play this video over and over for about an hour straight and you'll get the general idea of what my house sounded like today. Also playing the drums is Very Serious Business.
Joanna will be coming over again tomorrow, because that night is our first home roller derby bout, which I'm super excited about. I'm not playing in this particular one (we have twenty team members and are only allowed fourteen on each bout roster, which means that six people sit out each game) but you'll still see me out there cheering the Trampires on and having a blast! So if you're in the area you should totally come.
Seriously-- come. It will be awesome, I swear.
In other news, I am extremely excited to announce that I finally managed to make Connor an appointment for a sedated brain MRI and a hearing test (BAER). I've been working on getting this thing scheduled since November, which is absolutely ridiculous. If I'd wanted to have the procedures done separately I don't think there would have been a problem, but I wanted them done at the same time so Connor would only have to be sedated once, and I wanted them done at a Children's hospital because the little guy is a hard kid to find a vein on (and also tough to intubate if that's necessary, though it probably won't be for these procedures). But I stuck to my guns and eventually won out despite multiple issues with referrals, wrong fax numbers, coding errors etc. and so the appointment is on the calender! It's in April, but hey-- I'll take what I can get.
And trust me, we'll be going to that thing no matter what the weather is outside. I don't care if I have to drag Connor's wheelchair through twenty feet of snow on the ground-- I'm not rescheduling.
~Jess
5 years ago
2 comments:
1. Connor drumming? AWESOME
2. Finally! Connor has an appointment for his MRI! YAY
3. If I could make to the bout, I would. You're just a **little** too far away...
Love the video -- great grip on the spoon, and great bed hair, too!
I have to confess, I went back and read The Kissing Corner. It's just something I have to do every now and then. It puts things into perspective. And to see him as a newborn, with tubes and wires sticking out all over the place, and to see him now as a Big Boy with that big pile of hair and a mean sense of rhythm.... Amazing kid you got there.
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